Go confidently in the direction of your dreams. Live the life you have imagined.

Henry David Thoreau

The Last Cycle and then where?

Monday May 28 and Tuesday May 29Lithia Springs Park Site 40Lithia, Florida

It is Memorial Day and Oscar Scherer is clearing out.

Everyone is leaving on the last day of their 3 day week-end. We get packed up and even after a 20 minute wait at the dump station, we are hooked up, car on dolly and rolling toward route 75 North by 10:30. At noon we are in line to get in to Lithia Springs where each car has to be told that the spring is closed due to lightning and they can pay the park entrance fee and come in and wait to see if the park can reopen it or turn around and leave. Each car slowly decides and executes.

It’s our turn and the park manager tells us to pull over there.

By now, He knows us by sight and name and before he can rent us a site again, he has to check our total nights since we’ve been here so often before. The Hillsborough County Parks have a 90 day maximum stay per year, and a 2 week single stay policy. This park is the closest reasonably price place to stay near Florida Cancer Specialists in Brandon which is why we keep coming back. The 2 week limit has worked fine for us since David’s treatment lasts 2 weeks and then he has one week with no meds before beginning another treatment cycle. So we leave Lithia on “vacation” for that week and come back for the next treatment.

We wait while the manager checks with the other parks to see if we’ve stayed there too. The 90 day limit is for all their parks in combination not just for one park. The verdict is we have not overstayed our welcome yet but we are getting close.

Hopefully it won’t matter since David is getting close to the end of treatment as well. Tomorrow will start his last 2 week cycle and then we don’t know exactly what will happen or where we will go but ultimately we will no longer be able to be at a park which requires us to move every two weeks. I’m not even sure David will be allowed to be in the motor home after the transplant since it is fully carpeted and upholstered and thus hard to keep as clean as everywhere he is must be after his immune system is completely destroyed.

It’s difficult having no idea how any of this is going to go.

No idea where we will be staying or what it will cost or for how long. No idea whether he will be strong enough to do the transplant or ever be even remotely the same after he does it. Each person reacts differently to this drastic procedure. All are glad to add a few years onto their lives especially if they are not too debilitated by the procedure. But whether David will ever bike any Rails to Trails or hike Angel’s Landing in Zion, or play racquetball or kayak in the Bay again is a total unknown.

But for now we’re under our 90 days here and since it is Memorial Day and everyone has pulled out, we are able to slip into site 40 again where we hang out and watch the rain drops pepper the surface of the river. This fellow has taken up my spot on the river but no matter since it is raining too hard for me as you can see by the spots on the picture.

Tuesday is doctor day.

Huge leaf on the path to the kayak launch. Beautiful but probably an exotic invasive like Multiple Myeloma.

We go to Brandon to Florida Cancer Specialists where we spend 4 1/2 hours. They take blood, we wait for the results. We meet with Dr. David Wright who can’t tell us why the numbers have flattened out 3 times in a row now. This is now 3 weeks of the same number. Low but not low enough. Down from the initial 5.3 to 0.3 now but it needs to be 0.0. We were sure that when it was dropping by half each time that the visit after it got to 0.3 it would be 0.15 and then 0.0 today. But that hasn’t happened. It seems stuck at 0.3 although the numbers from today’s blood draw are not in so the jury isn’t out. Dr. Wright has no idea whether we can get it to 0.0 which would make the transplant much more likely to keep David at Complete Remission if he went into it at that state. But we’re still hopeful.

The end of the induction treatment phase is near.

They set up what will be David’s last appointment with Wright on June 19 and he gets a subcutaneous velcade shot. Only 3 more Velcades to go and he’s hopefully finished with that medication on Friday June 8. We are really anxious to see if, as Wright contends, David will put weight back on, his fatigue will go away or at least significantly lessen, he will have more strength in his legs, the back pain will go away. Sounds mighty optimistic to me but it sure would be terrific.

Path from the back of the site leadingto the kayak/canoe launch.

Of course this will take at least a month after the medication ends to begin to show up and hopefully David will be in transplant shortly after that. Enduring the transplant and recovering from it is an additional set of problems and takes multiple months. We are still waiting for final approval for the dates when all that will take place. We may be able to return here to Lithia for one more 2 week stint without medications before all the transplant work up begins.

And then what?

Then we must find some sort of housing for at least 8 weeks at a minimum to accommodate the entire transplant process.

It’s been a long day and I am tired when we return home. David is feeling pretty good since today is a Dex day so he fixes dinner. I read aloud some Shadow Country, check for blog comments to cheer me up and the day is done.

31 comments:

Oh, Sherry, this sounds so sad and uncertain & i know that it is. Think of your beautiful days at the beach. Am sure things will work out, all will be well. Thinking of you both & so wish you well. Take Care & God Bless!!!

All of this must certainly put a strain on both of you. It's too bad the state parks can't make an exception for extenuating circumstances. Will David have to live like the boy in the bubble after the transplant for a while? Wish I were close enough to give you a little break...

I wonder if the park people might cut you some slack if they understood the situation? Maybe not check quite so thoroughly?

Do you mind saying what the numbers are that the doctors are checking for? Is it a cell count, or a marker, or what?

I would like to be the 127th person to ask if you have considered a PayPal button on your blog. You don't want to deny us the privilege of helping, even a tiny bit. It's not like it's a Help Us Go Out to Dinner! button. Not that there's anything wrong with that. :D

I'm so sorry for the uncertainties you guys are facing and wishing that there was more I could do besides thoughts and prayers. Have you asked the State Parks if they can offer some sort of waiver for you guys? Hugs to both of you!

Oh, what to say. How I wish I could help you--I'm sure all your followers feel the same way. Sherry, have you inquired whether the state park system will make an exception for your case? I'm wondering if the hospital, once David is on his way to transplant, will have housing suggestions. I know that some hospitals even have RV spaces for patients--knowing how thorough you are, I'm sure you have checked.

I just went online, today, to register to be a marrow donor and they won't let me because of age restrictions. 18-60. I did it because my little grand niece's numbers are low and a little friend of hers from the cancer center relapsed and now needs a marrow transplant. I know David has opted to use his own marrow.

I looked up housing for Moffitt on line and came up with this, Sherry. http://www.joeshouse.org/Lodging/tabid/55/Default.aspxAt least one is free http://www.joeshouse.org/Lodging/tabid/55/Default.aspx

All those of us in blogland can do is offer moral support. A day doesn't go by that you're not in my thoughts. I know this must be a very stressful and scary time for you--even as courageous as you both have been.

If you were in Atlanta, you could have my house. I have all wood floors and I could stay at my daughter's house only a mile away. How I wish that was possible. If there is a chance that you could transfer--there's Northside Cancer Center about 4 miles away, Emory and St. Joseph's are about the same distance. Just so you have an option. That said, I would think the people at Moffitt will have alternatives for you. My offer is sincere, though, and I hope you wouldn't hesitate if it is viable for you.

You guys are the best for sure. Thanks so much for your wishes and offers of support. Just having you there to listen and talk back is wonderful.

We won't run out of days in Lithia before we have to be somewhere we can stay for 8 or 10 weeks. It's really too much to ask of them to extend so long a period of uninterrupted time to us given their policies and that the request wouldn't be for financial reasons but rather just because I prefer beautiful surroundings so I'm not persuing. I'll be fine I'm just whining.

As for the Paypal suggestion, so far we are ok with money. We've always been WAY frugal and that is paying off at this point. When you have to really tighten, then you do. I mean our gas costs are way down. :-)

Rox the numbers are blood protein numbers and in specific something called an M-Spike. There are other things they are using as well but this is the real indicator.

Judy, I don't think he will have to be in a bubble, at least they haven't dropped that bomb on us yet but I believe he will have to be in a sterile environment. Everybody with masks and gloves and paper gowns and slippers etc for 10 to 20 days after the transplant. And he will have to wear the mask and be incredibly careful what he touches and where he goes once he is at all back on his feet and can leave the hospital. Good thing we don't go to restaurants since that will be out of the question for some time.

Hobopals,That is the link we used. Hope House is the Moffitt site that is in great demand and highly booked. We hope to spend a few days there but probably not many unless his recovery is problematic. The other places are far too expensive per day ($89 before tax) even with their 11% and 15% discounts and most of them are hotels. We have talked with everyone at the hospital and I too was amazed that they have no ideas about RVers. In Florida???? Your offer is so generous thank you. We've done the treatment here and this is where his doctors are so we will manage it all here I'm sure.

I hope you find a housing solution soon because there are enough unknowns just from the treatment and transplant. I bet the Hillsborough County Parks Dept would extend the 90 rule since y'all have been so good about the 2 week limit. I know it can be a challenge dealing with any government entity though.Syl

It must be exhausting, all the numbers, the places to stay (or not stay!), where to go & be. I'm still praying that a miracle will occur, at this point not sure what that is. Hugs to both of you, know that all of us are thinking & praying for you both daily.

What can I say that hasn't already been said...prayers and blessings to you both, and I hope everybody in turn asks their church, family and friends beyond the blogging circle to pray for Sherry and David, which I bet everybody is doing already...but it helps to spread the prayer circle outwards--the more, the better! Take care, my friends, we are here with you....hope there's a housing break in the future for you. What a nice offer from Hobopals!

This just sounds so incredibly complex, Sherry, and as other have said, exhausting. Physically and emotionally as well. I also appreciate your willingness to take the time to share all the complexity, and to share things like water and beach time in the midst of all this. You two are an incredible pair. I think of you every day and send prayers and good thoughts.

Well, we wish we had something truly inspiring to say to you that hasn't been said. Just want you to know that David and you are in our thoughts everyday!! We know you have a lot to face, but we continue to believe you two will beat this cancer. You have done everything possible to reach that outcome. Hugs and hugs and hugs again....

Sincere thanks for all the offers of support and help. It means a lot to us to have such encouragement & support. My deepest praise goes to you Sherry for you really do carry us through no matter how bad it gets.

Thanks to you all for your understanding and support. It is great to have you there in the down days and the up days. The biggest problem of all is that Multiple Myeloma is not a cancer you can beat. It is an incurable cancer. This is a cancer where the best you can hope with all of this is to extend your life a few years so perhaps they might find the cure or some new thing that will push it back into remission when it flares back up on you. But there are no guarantees and everyone's situation is different in terms of how long they live and how symptom free they are after treatment and transplant.

You two are amazing....I love your positivity..you are in our thoughts and prayers daily. You have so much on your plate but you continue to see the beauty in life and its visible from your pictures. Love the one out your dinette window. Sure wish we had a magic wand we could just wave for you folks and make all of this go away for you. We will continue to pray for a miracle. So many hurdles..but you both seem to be fantastic jumpers.

You are both so brave. Going thru any kind of unknown medical procedure is hard enough but not knowing where you will stay adds stress. Sure hope David does gain wait and strength during his time off the meds. Too bad I don't live closer to Tampa and didnt have carpet and dogs or you could stay with us. Let me know if you need anything and I can be there in a little over an hour! God bless you both!

Well said.Keep in mind the extraordinary genomic strategies being developed… startling new successes every day.Wish we could find you a comfy, sterile bubble-house for the recovery. RV’s may be great toys, but they are impossibly germy. Any chance of getting an apartment for six months? The longer you give the immune system to build back up, the better.When transplants go well results can be excellent, and altho’ life may have thrown you lemons, it’s still worth it to squeeze out the last drops.Tell David we want that 0.0, asap.

I want to believe this next phase is a real turning point. The treatment cycles are ending, and a new phase is beginning... a phase that will allow David to gain weight and become stronger so that he can face the transplant. I know he needs weight, and sleep. So many of us go through our lives just assuming each "tomorrow" will be the same. Your blog has helped us all understand the uncertainty of life and health. Sherry, have you checked Craigs List under Temporary Housing for sublets? Perhaps this might be a far less costly situation if you can find one. I hope you both feel the comforting arms of love and support from so many that follow you on this blog. There are many prayers for strength, courage and healing that are being lifted on behalf of both of you. Again... if only we could only somehow lift this heavy burden from you and David we would do it. Your gift to all of us - is writing this blog and helping us share in this life struggle. David has many "cheerleaders" out there pulling for him. I know that Roger is willing to be there at almost a moment's notice (me too) - if there is any way we can lighten this burden.

Hang in there Sherry. We asked one friend who has some land about parking your rig, but they have no place the horses can not access. The horses eat everything apparently. We will send out a broader message today. I wish there was more that we can do. You and David are in our thoughts daily.

Once the transplant takes place, never underestimate the necessity to stay germ free. Buy and use face masks, even though uncomfortable. Bonus: this makes it easy to keep germs from being passed into the mouth/nose from one's hands. Consider paper-covered, throw-away straws for liquids.

Keep clean the table surfaces where David will be eating or laying his hands/arms down. After over four years post transplant, I STILL disinfect the eating area of our kitchen island just before we eat because that surface seems to be the landing place for so many things that have been in the outside world.

The routines sound overwhelming at first, but become just that - routine.

You have the most amazing blog readers, Sherry. There is absolutely nothing I can say that hasn't already been said many times. The support system your blogging has brought about is incredible. Hang on to all those positive thoughts, prayers and suggestions. With so much positive energy being sent your way, good things HAVE to happen! I, too, think of you daily and hope for that miracle.

So many people have already said what was on my mind while I was reading your blog, so I'll just say -- ditto, ditto, and ditto again. It's the unknown that makes the situation so difficult, but you guys are bearing up well under the pressure. Stay strong, take it one day at a time. Here's to that all-important 0.0.

The unknown is indeed unnerving but, as stated above, take it one day at a time. You and David are amazing in how you continuously rise to the challenge, and I know you'll continue to do so. Hang on. We're all with you.

To be honest, it is difficult for me to read this blog sometimes. It hits so close to home - to two people I love more than any in this world. I don't like the feeling that, even as your daughter, I cannot ease the uncertainty of this - that hurts. I try to stay positive and always hopeful - not easy, but necessary. Also I will note that the comments here are just incredible. Thank you to everyone reading this blog for the support you provide my parents and your very kind offers. I am so, so very thankful. It really is touching.